Video: ‘Passages’ details crisis of caregiving

  1. Transcript of: ‘Passages’ details crisis of caregiving

    MEREDITH VIEIRA, co-host: Back at 8:45. And this morning on TODAY'S FAMILY , caregiving. Author Gail Sheehy , best-known for her popular "Passages" books, is confronting the issue in her new book, "Passages in Caregiving ." We're going to talk to her in just a moment, but first, her story in her own words.

    Ms. GAIL SHEEHY: I met Clay Felker when we were both working at the Herald Tribune . He was the big shot editor, New York magazine . I was in the women 's department , the estrogen zone. But somehow we met. We collaborated on many, many stories and then we had a whirlwind courtship, 17 years. We got married in his apartment. I stopped parsing the stages of adult life at 50 because I thought, `Well, what happens after 50 that's interesting?' Then I got to 50, I said, `This is great!' And then I got the call. Cancer? My husband has cancer? We don't expect it, you know, no one is prepared for it. We don't know how long it's going to take. I had nine months to prepare for the birth of my child; I had about nine hours to prepare for the dependence of my

    husband. Well, they told me I had a new role: Caregiver. Again. We're all going to have this role. I mean, this is the big passage for boomers today.

    VIEIRA: Gail Sheehy , good morning.

    Ms. SHEEHY: Good morning.

    VIEIRA: It really is the big passage . So many things happen, so many of them emotional, but also there's -- when you -- when you're faced with something like this, there are so many challenges you have to deal with; how do you begin to get organized?

    Ms. SHEEHY: You know, I think that you should have the conversation before the crisis . You know, if you notice that, you know, you have a white -knuckle driver dad or mom is forgetting how to make Thanksgiving dinner , there's a creeping crisis , get together with your siblings and talk about how you can help keep your parents independent and in their own homes as long as possible and start forming that circle of care because you can't do this alone, no one can.

    VIEIRA: No. Exactly, you need that circle of care, as you say. You write that the question is not if you will be called to act as a family caregiver, that call will come to most of us at some point, but how you will respond. Can you ever really prepare yourself emotionally?

    Ms. SHEEHY: Well, I think -- I'll tell you, that's why I wrote this book, I wasn't prepared. But if I had known that it's a long journey, it's usually at least five years, in my case it was 17 years, but it has many different phases. And if you have the idea of how you prepare and change your coping mechanisms for, you know, the shock and mobilization and setting up a new normal . And then if you get into playing God -- you can't play God because you're not God . You can't control it all. Take that pressure off yourself. And then moving on to create a circle of care and moving on to coming back yourself. You know, you can use dangerous illness as a way to jump-start your lives. My husband and I actually did that, we tore up our lives in New York , we moved to California , he started a new life shaping young journalists, I commuted. We felt young and in love all over again.

    VIEIRA: So there can be something positive that comes out of it is what you're saying.

    Ms. SHEEHY: Absolutely. You know, this is a time when you can become more intimate with your mother or father, reconcile differences, come together with siblings instead of still arguing about what color to paint the bedroom. It really can help.

    VIEIRA: I think what happens very often with caregivers is they're so consumed with helping someone else that they forget about their own needs and how important they are.

    Ms. SHEEHY: You know that as well as I do. You cannot do that. I always say if you have a job, hang on to it, you know, even if you'll be exhausted because you have to have someplace to go back to. And at one point, my husband's doctor actually ordered me to go away for a week. He said, `You're a writer. Be yourself. Go out on a presidential campaign and work.' And then when I came back, I was able to take my husband out for the evening . We had a marvelous evening . We forgot that night that he was sick. I couldn't have done that if I didn't replenish myself. And you have to do it over and over.

    VIEIRA: And over. Almost on a daily basis.

    Ms. SHEEHY: Absolutely.

    VIEIRA: You call this book a call to action , you write , "Even for the most loving and dutiful family members, the financial and emotional burdens of long-term caregiving can be unbearable. The only way a family is going to be able to afford the shift from institutional care to home care for seniors is if government helps to support family caregivers." Do you think we're going to see more aid from the government , Gail ?

    Ms. SHEEHY: There is a little bit, there's a beginning in the new health care reform law. There's a way that certain people who can't do so many activities on their own can get $75 a day to pay a family member to help them. It's not much, but it's a beginning.

    VIEIRA: It's a start.

    Ms. SHEEHY: Yeah. And, you know, the other thing is a lot of us are alone, we don't have a nearby family member to take care of us. And we don't want to get sick and be alone in a hospital. But the book is full of national resources and community organizations people don't know about and have volunteers that want to help keep people at home, safe and comfortable as long as they can, including with palliative care towards the end of their lives.

    VIEIRA: Yeah. Most of us, as you write in the book, are going to end up as a caregiver, so thank you, Gail , so much.

    Ms. SHEEHY: That's right .

    VIEIRA: Pleasure to see you.

    Ms. SHEEHY: Thank you, Meredith .

By contributor
updated 5/6/2010 8:19:07 AM ET 2010-05-06T12:19:07

Being married to someone with dementia may sharply increase your own risk of developing the condition, a new study shows.

Utah researchers found that seniors had six times the risk of developing dementia if they lived with a spouse who had been diagnosed with the condition, according to the study, which was published in the Journal of the American Geriatrics Society. And the increased risk was substantially higher for husbands than for wives.

“The good news is that most of the spouses did not develop dementia,” said the study’s lead author, Maria Norton, an associate professor in the department of Family, Consumer and Human Development at Utah State University, in Logan. “But this does alert us to the increased risk for some of them. We need to be taking care of the caregiver and finding ways to maximize the positives of care giving.”

The study followed 1,221 couples for 12 years. All 2,442 study volunteers were at least 65 years old and free of dementia at the outset. By the end of the study, 255 of the seniors had developed dementias, two-thirds of which were Alzheimer’s disease.

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Though the study did not explicitly ask whether spouses had taken on the role of caregiver, Norton says it’s safe to assume they did.

She and her colleagues were so surprised by their findings that they ran their numbers again, this time accounting for the spouses’ ages, genders and whether they had a form of the APOE gene that raises the risk for Alzheimer’s disease. In their new analysis, they also factored in socio-economic status, which can be a surrogate for shared environmental risk factors, such as access to medical care, diet and exercise.

The number barely budged: having a spouse with dementia still resulted in a six-fold increased risk of developing the condition. And the news was far worse for men: increase was almost 12-fold, as compared to a four-fold increase in women.

Norton and her colleagues don’t yet know what is at the root of the hike in risk. It’s entirely possible that there are environmental factors that we don’t yet know about, Norton said. “Controlling for economic status is not the same as controlling for the 5,000 things that people can share,” she said.

Finding the reason for the increased risk of dementia will be the focus for future research.

“We need more studies to determine how much of this association is due to caregiver stress and how much of it might be due to a shared environment,” she said. “It’s possible that we’ll find that there is something that the caregivers who developed dementia had in common, such as a particular personality trait or their coping styles. Or, maybe it isn’t as much about the caregiver so much as it is about the spouse who gets dementia first: how rapidly they decline, whether they have delusions. Not all dementias are the same. Some might be more stressful to the caregiver.”

An expert unaffiliated with the new study called the finding “compelling,” but not necessarily surprising.

“Caregiving is very stressful,” said Dr. Gary W. Small, director of the University of California-Los Angeles, Center on Aging and director of the Geriatric Psychiatry Division at the Semel Institute for Neuroscience and Human Behavior at the David Geffen School of Medicine at UCLA. “Studies have shown that caregivers for dementia patients have a high risk for major clinical depression. And there has been a study that showed that people who are prone to stress are at higher risk for Alzheimer’s.”

Other research has shown that stress can damage a part of the brain that is involved with memory. “Studies have shown that lab animals under stress have fewer cells in the hippocampus,” Small said. “And when human volunteers are injected with the stress hormone cortisol, they end up with a temporary impairment of memory.”

Small suspects that the husbands had a higher risk of dementia than the wives because men are not as used to taking on the role of caregiver as women in our society. “That finding is consistent with the sex specific roles that people still tend to take on in marriage,” he explained.

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